PatientsLikeMe Named a Top Real World App of 2008

ReadWriteWeb included PatientsLikeMe, a CommerceNet portfolio company, in their list of top “real world apps that have made our offline lives easier in 2008.”

“PatientsLikeMe is an online community for people with life-changing medical conditions like multiple sclerosis, post-traumatic stress disorder, or fibromyalgia. Even though the site is still relatively new, it already provides one of the largest patient communities, and also features a wide range of research tools for symptoms and treatments.

“PatientsLikeMe was founded in 2004 and defines its mission as providing a platform for sharing real world medical data. Members of the site often share data about their individual health experiences like symptoms, weight, mood swings, or drugs they have taken. Thanks to this, you can easily find others who are in the same situation as you and what treatments are working for them.”

Abstract: Breaking Down Barriers to Collaboration–The Health Commons InitiativeImagine a virtual marketplace or ecosystem where participants share data, knowledge, materials and services to accelerate research. The components might include databases on the results of chemical assays, toxicity screens, and clinical trials; libraries of drugs and chemical compounds; repositories of biological materials (tissue samples, cell lines, molecules), computational models predicting drug efficacies or side effects, and contract services for high-throughput genomics and proteomics, combinatorial drug screening, animal testing, biostatistics, and more. The resources offered through the Commons might not necessarily be free, though many could be. However, all would be available under standard pre-negotiated terms and conditions and with standardized data formats that eliminate the debilitating delays, legal wrangling and technical incompatibilities that frustrate scientific collaboration today.

We envision a Commons where a researcher will be able to order everything needed to replicate a published experiment as easily as ordering DVDs from Amazon. A Commons where one can create a workflow to exploit replicated results on an industrial scale–searching the world’s biological repositories for relevant materials; routing them to the best labs for molecular profiling; forwarding the data to a team of bioinfomaticians for collaborative analysis of potential drug targets; and finally hiring top service providers to run drug screens against those targets; with everything–knowledge, data, and materials–moving smoothly from one provider to the next, monitored and tracked with Fed-Ex precision; where the workflow scripts themselves can become part of the Commons, for others to reuse and improve. Health Commons’ marketplace will slash the time, cost, and risk of developing treatments for diseases. Individual researchers, institutions, and companies will be able to publish information about their expertise and resources so that others in the community can readily discover and use them. Core competencies, from clinical trial design to molecular profiling, will be packaged as turnkey services and made available over the Net. The Commons will serve as the public-domain, non-profit hub, with third-parties providing value added services that facilitate information access, communication, and collaboration.

Smaller clinics can play on the NHII, too

In the health care sector, the Health Insurance Portability and Accountability Act of 1996, as its compliance deadlines phase in, is requiring health care providers to turn to higher-tech operations to store and protect patient data and conduct electronic transactions.

Canyonlands Community Health Care, which operates a group of rural clinics in northern Arizona, was keeping records on paper two years ago. With a compliance deadline at its doorstep, it invested $500,000 in a computer network that stores patient records and other data. “That’s a big chunk of change for a nonprofit to commit to,” said Garrett Martin, information technology director of Canyonlands, who was brought in to install the system.

When the system is fully up and running this summer, doctors and nurses will be able to access medical records, e-mail and billing through hand-held computers and a secure, wireless network. “We’ve already realized efficiency, from the time a patient makes an appointment to the time we get them out the door,” Mr. Martin said. Concrete results are the big sell for small businesses.

Frank Muehleman, general manager for small and medium business at Dell, said: “They’re the most discriminating and discerning group when it comes to where and how to spend their money. Small businesses do not buy technology hoping there’ll be some payback in the future. They want immediate payback.”

Health Care Technology Is a Promise Unfinanced

“Congress, in its infinite wisdom, zeroed-out David
Brailer’s office,” said Newt Gingrich, the Republican
former House speaker, who is the founder of the Center for
Health Transformation, a health policy group. “They
couldn’t find $50 million to signal that David Brailer has
a real job and what he’s doing is important. Frankly, I
think it’s a disgrace.”

The Bush administration, Mr. Gingrich said, bore most of
the responsibility. “No one in the White House or in the
senior staff of the Department of Health and Human Services
fought for this,” he said.

Most of the investment for electronic health records and
networks for sharing information will now have to come from
private industry, probably billions of dollars over the
next several years.

The $50 million requested for Dr. Brailer’s office was to
have been used to provide seed money for health information
demonstration projects that would encourage the industry to
agree on technology standards, hasten investment by private
companies and accelerate the adoption of modern information
technology by doctors and hospitals.

October 29, 2004

Smart Health

Smart Valley, a non-profit committed to turning Silicon Valley into the leading user of the technologies it invents, and CommerceNet will work with the Smart Health Forum, a community of healthcare provider, insurers, employers and foundations in Silicon Valley. The Forum, which is open to all interested parties, will collaborate on the implementation of network-based tools that will greatly facilitate the sharing of medical records without compromising patient privacy, data security or provider choice.

The network will allow patients and providers to ‘publish’ an entry in a data registry when a healthcare transaction occurs, whether it’s a visit to a provider, filling a prescription or getting a test result. All of the patient’s data remains in the source systems – only a pointer is recorded. The next time there is a visit, whether to a doctor’s office or an emergency room, authorized caregivers will be able to see the transactions and call up x-ray images, test results and other information needed to provide rapid diagnosis and treatment. Similarly, consumers will be able to see and update their personal information and that of their children. Patients and providers will set the policy that determines who can see what data.

These network tools will be piloted in several different environments. Projects being considered include a senior- and chronic care in the emergency room and a ‘Virtual Clinic’ concept that illustrates how physicians and community-based caregivers can share information.

The pilots will be funded through a collection of public and private funds. CommerceNet is applying for state and federal funds, some of which will require matching funds from local organizations. We will work with community-based foundations to help us raise funds.

When proven, Smart Health will be made available to the rest of the Bay Area, California, and the nation.

October 28, 2004

WikiHealth

Imagine WikiHealth or WikiMed, an open, collaborative health database written by everyone in the world? If millions of people could contribute articles on health and well-being, diseases, treatments, symptoms, remedies, and personal experience with what worked and what didn’t with prescriptions, would the world be better off? Are you currently happy with the state of medical knowledge on the web? If you or someone you know is suffering from some condition, and you type the name of the condition into Google, are you satisfied you’re getting good results? In an age where, at least in the U.S., doctors are less and less likely to give you the time of day let alone spend time with you going into detail about everything there is to know about a condition, wouldn’t it be useful if there were an online resource with a strict NPOV (neutral point of view) containing in-depth encyclopedia information about health-related subjects?

WikiHealth. WikiMed. (Don’t bother, the domains are taken — maybe there’s hope!) But you get the idea: a worldwide open collaborative compendium of practical health and medical knowledge. Isn’t it time such a service existed?

Yes. Yes it is. For another example, there’s a related idea floating around CommerceNet’s healthcare team that it would be interesting to drop the NPOV and offer parametrized search — imagine if, for more controversial complementary-medicine theories, patients/advocates could just submit their anecdotal stories, but then you could ask for stories “similar” to your own to see what’s out there. In any case, WikiMed could be quite personalized to your medical “ideology” and idiopathy…

Electronic Medical Records Are Taking Root Locally

More than 100 state and local groups are moving quickly to establish their own networks in which various health-care providers can securely share patient information, aiming to cut down on medical errors and duplicated efforts…

The regional networks aim to get local providers to convert patients’ paper medical files to electronic records, and persuade doctors to exchange pertinent information with a patient’s other health-care providers. By using a single network, regional health groups say they can reduce medical mistakes, better track patients with chronic diseases such as diabetes, zip prescriptions electronically to pharmacies, and cut costs by eliminating duplicated lab tests and X-rays…

With no money or federal authority to mandate a national health-care network, regional networks are also emerging as the only solution to wiring up the country’s medical system. Creating a nationwide system for sharing medical records would cost billions of dollars, scaring off many legislators… because the U.S. has a highly fragmented private health-care system, ‘starting from the bottom and working up is the only viable approach,’ says Lewis Redd, who runs the health-care consulting practice for Capgemini.

The federal government’s role, he says, is to push for widespread adoption of a single technical standard that will let all the different medical records in the country eventually talk to each other and share data, all the while allowing access only to authorized users, to ensure privacy. Such technical standards already exist, and David Brailer, the U.S.’s health-information-technology czar, is in the process of deciding how best to endorse them and provide guidelines for their use.

The patchwork of medical privacy laws

The introduction to the paper below has a lengthy and illuminating rant about the pre-HIPAA patchwork of laws and regulations around medical records privacy. I’d definitely want to read the original NRC report…

The state of security in healthcare is no less diverse. In 1997, the National Research Council released a landmark work: For the Record: Protecting Electronic Health Information. This report of a field study revealed that healthcare organizations did very little to counter security threats. Although it could not document the actual volume of threats, it did identify mistakes, improper use of access privileges, unauthorized use for spite or profit, unauthorized physical intrusion, and technical break-in as not uncommon occurrences. Likewise, organizational and even simple technical mechanisms such as authentication, auditing, access controls, and cryptography were rarely in place. Most healthcare organizations relied on corporate culture and closed networks to protect the private information of their patients and providers.